Addressing the ‘elephant in the room’: Conversations about end-of-life choices

There’s this idea of the “perfect death.” It usually involves living to a ripe old age without experiencing cognitive or physical impairment. Then one day, preferably immediately after engaging in a favorite activity, you just drop dead.

The reality is that very few of us will actually experience the end of our lives this way. We’ll grow old slowly and likely lose abilities we once had, meaning we won’t be able to live as independently as we once did. This is true for us, and it’s true for our parents. We know this, and yet most of us still don’t talk about it.

The conversation about long-term care and end-of-life issues is among the most difficult discussions a child can have with a parent. Yet, addressing these topics early can avoid headaches, save money and establish an understanding of preferences and expectations.

According to elder-care professionals who have helped us explore this subject, broaching the topic is the hardest part. In an effort to begin the conversation, the Public Insight Network, along with WAMU Radio in Washington, D.C., asked sources to share their experiences.

Colleen Cunningham | Grove City, Ohio

Tell us a little bit about what prompted the discussion. How did it go?

My aunt had not been feeling well for some time. We insisted, finally, on seeing the doctor with her, but they admitted her before we could have a one-on-one [conversation].

When the doctor discussed the issue with her, he wasn’t clear and she wasn’t getting the facts of the matter. Finally, the doctor called me and was very straight forward. I asked if he had spoken to my aunt at any point in the same manner he was speaking to me. He seemed to believe he had.

The next time I saw her, everyone had figured out that she was very sick, except her. So I told her. Flat out. No bull. She took that well. When, a few weeks later, I had to tell her that what she was experiencing was the progression of her cancer, that didn’t go as well.

What advice do you have for those who have not yet discussed these issues?

You are dealing with an adult, not a child. They deserve a straight discussion so they can make choices for themselves. Don’t beat around the bush. It’s unkind to have everyone but the person most affected aware of what is happening. Be prepared for anger and then tears and then anger.

Is there anything else you’d like to tell us about this topic?

Even if they are angry, go back to be sure they have the chance to end things well. They are angry at something bigger than you.

Antonia Dolar | Jupiter, Fla.

Tell us a little bit about what prompted the discussion. How did it go?

The first conversation about preparation for end of life was with my brother, who died of melanoma at the age of 36 in 1975. I was in graduate school, getting a Masters of Social Work degree with an emphasis in gerontology and had taken classes on death and dying as an undergraduate.

Seeing that the social work staff at the VA hospital where he lived were not discussing his imminent death with him, I undertook that task. It was a great relief for him that someone acknowledged what he already knew. His impending death was the elephant in the room that everyone in the family knew but no one felt they could speak openly about. Among other things, we arranged a will and discussed funeral arrangements. Taking care of the details was his gift to his widow.

Long before my parents became seriously ill, we had a serious discussion about where they wished to be buried, whether they wanted hospice care (which was a very new concept at the time), what funeral arrangements they wanted. A will had been drawn up years before. As a result, we were able to avoid a lot of the emotional and financial stress that comes from having to make funeral arrangements once a loved one is deceased.

A third conversation about the end of life was with my mother-in-law, who although very ill, was adamantly not interested in talking about death or making any decisions about her care.

My husband and I sat with her in the lobby of an assisted living facility in Europe, where she had been for less than a year. When it became clear that she was emotionally unable to participate in any discussion, we told her what we intended to do in the event her health deteriorated to the point that extraordinary measures would be necessary to keep her alive.

She agreed that her son should make those decisions. He informed the staff at the facility, her doctors and her social worker. The discussion with my mother-in-law took place in the spring; she was admitted to hospice in the winter and died in December.

What advice do you have for those who have not yet discussed these issues?

Discussions about end of life do not have to be traumatic events if approached with respect and love. Fear is a poor master when it comes to difficult conversations with one’s family, as are anger and resentment, however present they might be in the mix of emotions. Ignoring reality will not make it easier in the long run, although that might be the case in the short run.

I believe it is best to have a series of discussions, beginning when one’s parents are relatively healthy. One way to initiate a discussion is to take some action for oneself, such as drafting a medical directive, becoming an organ donor or having a will drafted, then using this action to begin a general conversation.

George Bohmfalk | Charlotte, N.C.

George Bohmfalk and his mother at his home during a visit. (Photo provided by George Bohmfalk)

Tell us a little bit about what prompted the discussion. How did it go?

Discussed her wishes with my mother, then mine and my spouse’s with her and our two adult sons. It was prompted by mom being in her 80s and becoming frail and our interests in our kids knowing our wishes.

What advice do you have for those who have not yet discussed these issues?

Man up, decide, make your wishes known; only bad things to come from not discussing. After all, it’s just death!

Is there anything else you’d like to tell us about this topic?

Mom was real sanguine about her situation. We probably are, too — no emotions, just make a plan. But she refused to discuss his situation with Dad, a physician, as his Alzheimer’s became clear 15 years earlier. She was in great denial about that, which made things difficult.

Edwin Upton | Akron, Ohio

Tell us a little bit about what prompted the discussion. How did it go?

Poorly. I had a discussion with my dad about his failing health. He had several instances of falling and mentioned that he lost feeling in his feet. He resisted doing anything because he would lose his independence. Over the course of a year, we made suggestions but they were all rejected. We looked at assisted living facilities, but they were rejected.

Finally, I wrote to the state license bureau to have his license taken away. Even though he passed the tests, his doctor would not approve his license for medical reasons. He fired his doctor and changed his will to reduce any inheritance that my brother and I would get.

He eventually went to a nursing home because his wife had to go and he had no other real options. He died several years ago.

What advice do you have for those who have not yet discussed these issues?

Be prepared for resistance. Research all the options. Where my dad lived they had some very good senior transportation assistance but even this was rejected since he could not go whenever he wanted to go.

Frances Perkins | Memphis, Mo.

Tell us a little bit about what prompted the discussion. How did it go?

Living alone and without close relatives, I’ve had the talk strictly with myself. Together we strive to make the most practical and agreeable decisions we can. Upon reaching Medicare age, DNR (do not resuscitate) end-of-life instructions and a living will were set up.

What advice do you have for those who have not yet discussed these issues?

Wait too long and someone else will make these critical decisions for you, and you might not like what they do.

Is there anything else you’d like to tell us about this topic?

There’s nothing scary about a peaceful death. Think of it as graduation from one life plane to another. I used to work in hospice care and loved it. I felt bad for the families but not the patient when they passed, and it blessed me so to be with them at that time. We gave one another peace and assurance. And in true old Irish tradition, I raised the window to ease their journey when the time came.

Diane Carter | Boulder, Colo.

Tell us a little bit about what prompted the discussion. How did it go?

My husband of 48 years had a terminal blood disorder and died recently. I had to discuss banking, taxes, dissolving his business, burial and many other things. I often discussed these issues saying “if one of us died” so we would not only be discussing his death. You never know what day you could die.

What advice do you have for those who have not yet discussed these issues?

The discussions progress, so discuss things more than once. More information will come out each time as it gets easier. I was able to tell my husband several times what our relationship means to me.

Is there anything else you’d like to tell us about this topic?

The more you talk about end of life decisions the easier it is. It is breaking the ground with the first discussion that is the hardest. In my grief support group, several people had not discussed the end of life with their spouse and had really regretted this. They can never have a “do-over” either.

David Habben | Boise, Idaho

Tell us a little bit about what prompted the discussion. How did it go?

I have been on both sides of the conversation. Several years ago, my mother and step-father completed their will and made me the executor of their estate. They also have completed their advanced directive/living will documents. During a trip to visit them, we sat down and went over all the paperwork and discussed their wishes.

David Habben with his parents, George and Elizabeth Spanos, Thanksgiving 2011. (Photo provided by David Habben)

I believe seeing some of their family and friends pass away prompted their actions. My mother is the last of her generation who is still alive. There was really no discussion. They told me their wishes, and I will abide by them. I also have done the same with my children, prompted by the actions of my parents. I’ve also gone one step further and have done pre-planning with a local funeral home. I have what amounts to an insurance policy that will take care of the expenses for my cremation and burial. I have already made final arrangements and picked out a cremation casket and container for my cremated remains.

Both my parents and I have made arrangements to be interred at the same cemetery as my mother’s parents in Indiana.

What advice do you have for those who have not yet discussed these issues?

Do it now. If you have specific wishes, now is the time to present them to family and discuss them, before the time comes when you have no choice. And put everything in writing, in legal documents, so there is no question as to your wishes. Make sure all family members are aware of the documents and your wishes long before they need to carry them out.

Barbara Parker | Washington, D.C.

Tell us a little bit about what prompted the discussion. How did it go?

When my mother died, my brother and I discovered that she had left us with an amazing gift. She had already made all of the arrangements. She had planned her service, paid for the casket, etc., etc. That experience led me to attempt to do something similar for my children.

What advice do you have for those who have not yet discussed these issues?

Either DO IT NOW or make all the arrangements. It’s not fair to leave everything for your children to decide.

Alison Brody spends her day surrounded by stories from people all across the country. She works with journalists from newsrooms like NPR and The New York Times to help turn these insights into meaningful journalism (i.e., not from a press release or a political speech).

Before joining the PIN team, Alison worked as a PIN analyst at the public radio show Marketplace. For two years she asked questions about credit card debt, employment, unemployment and health insurance. She's also worked at Los Angeles’ public television station, where she helped produce an international news pilot and a digital prototype that was half game, half social network, aimed at teaching students about the U.S. Constitution.